Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell

“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue

“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica

“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29

Special Article for Plastic Surgeons

Posted By Diana Haberkamp | On August 10th, 2016

After two years of hard work by NF Midwest, last year we were able to get the American Medical Association (AMA) to approve two new temporary Current Procedural Terminology (CPT) Codes. The creation of these codes expanded the definition of the different ways neurofibromas may be removed to include the high quantity removal of neurofibromas through electrosurgery or “destruction”. This procedure is often referred to as “electrodessication”. Previously, the removal of a large quantity of neurofibromas fell under less defined codes that often caused confusion. LEARN MORE

CPT codes are defined by the AMA and are used to identify what medical service or procedure was performed. Insurance companies need to know what procedure was used to determine payment. The CPT code provides this information.

The new CPT codes are temporary and in effect until the end of 2022 and will have to be used by surgeons who remove high quantities of dermal neurofibromas by electrosurgery. If more than 30 surgeons use the code, it will probably be made permanent.

We know that this can be quite confusing to most of us who are not in the medical field!

To help the NF community, NF Midwest, has received exclusive rights from the AMA to publish an article on our website from the AMA’s April 2016 edition of the CPT Assistant. This article summarizes these code changes for physicians. Please, share this article with your surgeons or prospective surgeons.

If you have a surgeon who uses the code or has interest in or questions about removing neurofibromas in high quantity through electrosurgery, please contact us.